Category: Life



This evening I was calling cancer survivors to let them know about the annual Relay for Life. I made about 30 calls and got in touch with about 20 people, I think. Everyone I talked to was looking forward to attending. It was good talking to them. We all have something in common. I got to talk to a few people who were at or near their 5 year anniversary of being cancer-free. I had to call one man back to ask one of my required questions because I lost track of what I was supposed to be doing.

Tomorrow I see Dr. Hurd at Wake Forest. I have to make some notes about what I need to discuss with him. Right after I went of dex last week (for the week off), I had a lot of pain in my right leg. I worry about AVN, having been on steroids for so long, and so much. I just have to have it checked out, because I’d rather complain about something that turns out to be nothing than end up having to have hip replacement surgery.

There’s also been a lot of buzz about Zometa and ONJ lately. I don’t think I should be having it any more than every 3 months anymore. I’ve been having it every month for 3 years now. Some doctors stop it for their patients after 2 years.

Medicare proposed changes

This was posted on the ACOR MM list. I hope we’ll all take some action!

For those of you who do not live in the US, I apologize. I also apologize for adding this to everyone’s email. I haven’t don’t this before so …

Apparently someone in the Center for Medicare Services (CMS) has come up with the following idea to save money. They will limit the number of times that certain laboratory tests will be reimbursed. CMS calls these tests Medically Unbelievable Edits (MUE’s).

Here are some examples of what will happen:
If a patient has a culture and sensitivity that determines what bacteria might be causing an infection and which antimicrobials will/will not work, then you can only have two per day. So don’t have bacteria in three places on the same day. One culture will have to wait for the next day

We all know of people who get more than one unit of blood per day in out-patient settings. Well, under this regulation, you will only be able to get 1 crossmatch per day which effectively limits you to one unit per day. And that will dramatically affect the treatment of anemia in out patients.

In the case of serum protein immunoelectrophoresis, CMS proposes to pay for only one assay per day. Specifically, you can get an IgG level but not an IgA or IgM on the same day.

In the case of flow cytometry, they will pay for 2 probes on any given day. Would you prefer CD5 and Cd 19 or CD20 and CD38 because you need to space them out over time? Where you usually can get a panel of molecular diagnostic markers performed at the same time, they will only pay for 1 a day. So, if your cells need to be tested with 10 markers, you need to have 1 performed per day.

In addition to detracting significantly from patient care, laboratory personnel will probably not refuse to perform these tests. But they won’t be able to bill Medicare for them. That means that they will either try to eat the cost (although that breaks a 19th century federal law on fraud and abuse) or charge the patient – except in those states that have no balance billing laws. Small laboratories such as Physician Office Laboratories or clinic laboratories or community hospital laboratories may go bankrupt and close or severely limit their service.

My suggestion is to call/email your Senators and Representatives to have them put pressure on CMS to withdraw this idea. You can also write directly to
Mark McClellan, M.D., Ph.D.
Centers for Medicare and Medicaid Services
Department of Health and Human Services
Attention: CMS-1502-FC
Room 445-G, HHH building
200 Independence Ave SW
Washington, DC 20201

The comment period ends on March 30 and unless turned back will go into effect on July 1, 2006.

Susan J. Leclair, Ph.D., CLS(NCA)
Chancellor Professor
Department of Medical Laboratory Science
University of Massachusetts Dartmouth
Dartmouth, Massachusetts 02747-2300


What a cute doggieHere’s a picture of Buddy after a haircut. We’re about to go out for a walk, which is his favorite time of day. He always knows when it’s time, because I put on my shoes. I actually can’t stand wearing shoes since I got neuropathy from the thalidomide. No longer do I have the joy of buying comfy new shoes.

Buddy is half collie and half golden retriever. His head is definitely retriever. However, he has no interest in retrieving anything!

Sleep over

I had my neice and nephew (7 and 4) stay over last night. It was a fun time. Kids get up early! We made “cars” from cardboard boxes this morning and had breakfast in bed. They’ve gone home now, so it’s quiet here. For some reason, they decided to help me sweep and mop the kitchen floor! Is this why people have kids?


On February 6, 2006, President Bush released his proposed federal budget for Fiscal Year (FY) 2007 to Congress. Unfortunately, the President’s budget fails to meet even the basic public health needs for cancer patients and survivors as well as for other Americans with chronic disease and disability.

On the heels of approving the first cut to NIH and NCI funding since 1970 in FY 2006, the President has proposed even deeper cuts to NCI in FY 2007. As a result, the total number of NIH-funded research project grants would drop by 642, or 2 percent, below last year’s level. The President’s budget would cut funding for 18 of the 19 institutes–all, except the National Institute of Allergy and Infectious Diseases. Funding for the National Cancer Institute would be cut by $40 million.

In addition to these cuts in medical research, the President’s budget also proposes deep reductions at CDC for chronic disease prevention, quality of life programs, and health promotion. Specifically, the proposal cuts nearly $20 million from chronic disease programs, which include cancer control, prevention, and survivorship. In fact, under the President’s proposal, the CDC Cancer programs, which are already severely under-funded, would be cut by more the $3 million.

While this is very serious situation, there is a glimmer of hope. While he does make budget recommendations, ultimately, the President doesn’t get to decide how much money is spent on these critical programs. That responsibility lies solely with the Congress. Thus, the only way to GUARANTEE that these programs are not only saved from cuts but also receive necessary increases in FY 2007 is for Congress restore these draconian proposed cuts AND provide the appropriate increases.

We simply cannot rely on the Appropriations Committee to fund programs at appropriate levels if they do not have the authority to spend the money. As we saw last year, the Appropriations Committee can only spend as much money as they are allocated. That starts with the Congressional Budget Resolution, which sets the spending caps for the year by “Functions.” For health care, including medical research and public health programs, the critical Function is “550.” The bottom line is simple — if the Budget Resolution CUTS Function 550, the Appropriations bill MUST CUT medical research and public health programs.

The President himself has said, “in order to win the war against cancer we must fund the war against cancer,” and in proclaiming National Cancer Control month last April said, “aggressive funding will lead scientists to earlier diagnoses and improved treatments for lung, colorectal and other cancers.” The budget he has proposed is far from adequate to fulfill this pledge for “aggressive funding.” Additionally, 92 Senators and 280 Representatives signed a letter to the President in support of providing the resources necessary to end suffering and death from cancer by 2015.

The President and Members of Congress can’t have it both ways — if they support cancer research and public health programs and are serious about their commitment to end suffering and death from cancer, they must support a Congressional Budget Resolution that increases Function 550 funding over last year’s level. If they support a Budget Resolution that cuts Function 550, that means they support cutting cancer research, public health programs at CDC and quality of life for all Americans who are living with cancer.


The week of February 27-March 3, we need you to join the millions of Americans touched by cancer to tell your Representative and Senators to reject this misguided budget.

Tell your legislators:

When the Budget Resolution is considered in the House and Senate, ask them to oppose the President’s proposed cuts and stand with you, their constituent, in support of our efforts to increase funding for cancer research and programs. Request that they vote to increase funding for cancer research and programs by supporting every effort to increase funding for Function 550 over last year’s level.

  • Please call 202-225-3121 and ask to be connected to your Senators and Representative.
  • Once connected to the office, ask to speak with the legislative assistant that handles health care or budget issues.
  • Share with them the information and request above regarding their bosses vote on the FY 2007 budget resolution.
  • Ask for a commitment from them to support any/every effort and amendment to increase funding for Function 550 and cancer research and programs.
  • Make it clear that there is no excuse, rationale, or explanation to justify voting against their constituents and approximately 1.5 million Americans who will be diagnosed with cancer this year and the nearly 10 million Americans living with and beyond cancer.
  • Finally, let them know you will be following the budget process closely and ask them to keep you up to date on what actions they take to support increasing funding for cancer research and programs.


My 2004 Jetta TDI WagonI’ve had my Jetta TDI wagon for over a year now, and average between 35-38 mpg, average driving. I haven’t had any long trips, really, so I don’t know about straight highway driving. So far, it’s been a good car. The salesman said it could last me the rest of my life. I kind of laughed when he said that, because of my condition. Still, it would be nice to outlast my car! These diesel engines are capable of 300k miles. I wish someone could tell me why diesel fuel costs more than gasoline, considering it requires less refinement. It used to be much cheaper! In an emergency, I was told, one can put kerosene in a diesel car. I would be certain that was no myth before I ever tried it.


My car was in for service at the VW dealer last week so, while it was there, I had them put in an adapter for my iPod. It’s pretty cool not to have to juggle CDs or look for radio stations anymore. I have music and audiobooks on my iPod which can keep me busy for hours and hours.